My Cart

Kristina Bilyeu-CML

I was a 39 year old single mom living my perfect life; two beautiful children, a fiancé I was planning my future with, on my way to being one of the first in my family to graduate college, and a childcare career that made me almost as happy as my own family life did. That is until I heard 3 simple letters from my doctor, “CML” (Chronic Myelogenous Leukemia). Yes, I was diagnosed with the big “C” on February 5, 2014. Although my prognosis started as being very good, I was terrified! Not so much about dying because of the high hopes of new oral Chemotherapy medications working, but about losing the life I had been living and all of the changes that would now need to take place. So many questions rolled through my mind. I had questions about my questions! It all seemed so unreal, as if I was looking through a window into someone else’s life. And this is exactly how I began to handle things…as if I was fighting for someone else, a loved one!

It was only a matter of time that I developed severe side effects from the medication including nausea, vomiting, muscle and joint pain, swollen eyes, fevers, rashes covering most of my body and eventually ended up staying in the hospital due to allergic reactions that the doctors said were doing me more harm that the actual Leukemia. This is about the time my fiancé decided that it was just too much for him and he was no longer strong enough to continue into an uncertain future. In addition to this, my children’s father decided it was a good time to fight me for custody after 8 years, stating that I would no longer be able to care for them. Imagine how lost and scared I was!

So my fight continues…

Now it was time for me to try other medications only to end up with the same type of issues or my body just totally rejected the medication all together, never reaching a remission state. This all became very trying and difficult but I promised myself and my loved ones that I will never give up because, of course, I’m fighting for a loved one! Wait!!… This is when I’m starting to realize and except that the loved one is “me”! Not only do they love and support me, but I need to love and support me the same. They have not given up on me so I will not give up either!

Continuing to fight….

So on to my next step, preparing for transplant. My doctors said without transplant, the medications may only buy me time, maybe a year or two. After having my 3 siblings tested to be my match and donor, my youngest brother’s test came back as a half match (6 out of 10). My doctors decided they preferred to see if we could find a closer match but to our surprise there was no match for me on the national registry! This was devastating!! It put me back at relying on my brother being my donor for a Haploidential transplant. With months of waiting to get a protocol developed and approved, it finally happened! Exciting and scary! It had finally come time for me to get things in order and prepare for transplant. During this time, I quit school and closed down my Family Childcare, knowing it could be a year or even much longer before I would be capable of continuing either. At this point, my doctor even told me it could be well into three years, if ever, before I could open up my childcare again or do the same type of work. There were just too many risks. More devastation, as this is what my degree was to be in, with only 7 more classes to go.

Nope…. still not going let this stop me!! Still fighting and smiling 🙂

The day I met with the transplant team to fill out paperwork for consent to transplant, I was once again devastated. My brother could no longer be my donor. I have built up an antibody that he has the antigen to, which would ultimately put me at an unreasonable amount of risk of rejecting the transplant. Without any other options and a very low chance of matching, it was now time to have my own two children tested. The same results came back; they had the same antigen and could not be used as my donor. Now we are back to having no family match and no match for me on the national registry. As for now, I will continue taking my chemo pill until a match is found or until we find another path leading to my remission.

So here it is, another birthday has passed and I am now Fabulously Fighting at Forty!!. Has it been a rollercoaster of devastation?. YES! But not without learning a lot about myself, what is, and has always been the most important part of my life, my kids and the loved ones that are there fighting with me every step of the way. I have already fought and won!! During this journey I have found a reason to smile every day, I’m happy to have continued full custody of my children (not a day missed), will hopefully re-enroll in school this fall semester, and am planning on enjoying the adventures in reinventing myself and my career path. These are just a few of the many reason I know I’m strong enough to win my fight against Leukemia no matter how much fight it takes or how many detours I’m given. Fighting is living and detours are life’s journeys, they help us to appreciate where we were, where we are, and where we are going.

There may be a lot of detours in my life journey but I’m going to smile all the way through the ride! I am going to live my life fighting, never giving up, and getting my perfect life back because I have a future!! So let’s all work together to build up the registry, giving hope, not just to myself but to all who are looking for their match and fabulously fighting!!

Related

Facebook

We are swabbing tonight at @majestic_ventura_theater with @floggingmollyband @jonsnodgrass @scotthbiram thank you to @schomphonda @schompmini for getting #lhsrover and #saltycamper around America #savinglivesoneconcertatatime #getonthelist #getswabbed ... See MoreSee Less